Aspergers/ASD support thread

blue_monkey_2

I do not know, she as talking so much that it was hard to take everything in. I think it was because she did not want to doagnose him at such a young age and that behaviour therapy was the better option because he could be 'changed'. I guess. That was the way I understood it from how she said it. Then she said if the threapy did not work he would go back to be diagnosed with ADHD.

I am just confused - but we have got this far another few months while we get the housing situation sorted is not going to hurt. It is more the ASD side I want sorted, I have someone to call about the Behaviour Therapy but what do I do about the ASD - the doctor was worried about it and wanted him referred but if they refuse to see him what happens then??

mandy.h_2

blue monkey - you are in same position i was in a few year ago i knew my son was asd , gp also new but hospital camhs service refused to diagnose because he socially interacted with her, the fact that hed been seeing her fot two years and was used to going did not mean anything to her. In the end we got so frustrated we used his dla money to pay to see a proffesor in sheffield who was supposed to be a expert in asd. he had a 1 1/2 hour session i filled in hundreds of questions about son right back to being pregenant and around his birth. He said it was blatantly obvious he had aspergers. I was so annoyed it had to come to this. We already new but needed a diagnosis for school to believe us and give extra support.

Savvy_Sue

blue_monkey, I think it would be worth you making a quick phone call to PALS (Patient Advice and Liaison Service) at the hospital where you went most recently, or where you saw CAMHS (I think I'm right in thinking that you've seen CAMHS once but they don't now want to see him again until he's 7)? Anyway, I think any PALS would do to start with, ask for them via the switchboard. You need to tell them how frustrating it is that you're not getting copies of letters, and nor is your GP, so you just don't know what's going on, and ask how this situation can be resolved.

It's not like making a formal complaint, it's meant to be a way of getting things which don't work right improved.

IF you can cope with that on top of everything else, that is ...

Sarahsaver

My GP said my DS was just 'a normal kid who had tantrums' The HV laughed at me and said 'all kids are different' so i self referred direct to CAMHS.
It took years of behaviour intervention team til one worker said look i will be honest i think he needs more help then i can give, and referred us to a fantastic male psych. nurse who must be a guardian angel. He referred us to a consultant who almost immediately said to me 'your son is very different we will do more tests' along the way a behatch psychotherapist who told me its all my fault.
Try every angle until you get what you KNOW you need. Some of this still makes me feel agrieved, especially for the kids whose parents may not know the system or not be brave enough to self refer, but at the same time relieved that at last my DS is more likely to get the help he needs.
I thik my GP may be back on side after the 18 page report the psych. wrote. If he isnt back on side he has his head in the sand!
PM me if you want Blue Monkey, best of luck;)

Sarahsaver

Went to see the SENCO today to book an appointment (very inflexible only available 2 days a week GRR)
Gave her a copy of the 18 page report on DS from CAMHS.

She said to me 'What are you hoping for' !!!!!! thank God my DS has a Mum + Stepdad who will stand up for him and knows how to. Heck she is the 'specialist' she should KNOW he will have additional needs!

Savvy_Sue

If I could try to calm you down, Sarahsaver, do you not think it possible she was asking the question because she wanted to find out what your expectations are, rather than because she thinks you're expecting too much of her / the school?

I can't remember what kind of support your son gets, and whether you think it's enough or not, but that is a reasonable question in some circumstances, IMO.

To put it another way, some parents will move heaven and earth to keep their children in mainstream schooling, while others will do the same to get their child OUT of mainstream and into an appropriate special needs school. If I were a SENCO, I'd quite like to know what the parents I was seeing had as their goal.

I appreciate it may just have been a fob-off, but equally it may not have been.

Sarahsaver

Thanks Sue;) calm...calm...calm...
it was the sneery sideways glance that accompanied the 'what are you hoping for' that worried me!
He has an IEP currently which seems to depend on the teachers ability to cope with DS rather than DS's needs. (he didnt have an IEP one year bcos the teacher could 'manage his behaviour' :eek:)

I suppose he needs help socialising but I dont know if hes that bothered OR if they would give a monkeys. He had a friend over one day last week but hardly interacted with him at all. for DS just having this friend in the house was enough.
Have also been on the phone to the school nurse who is going to send me a letter outlining DS's eneuresis problem (daytime as well) THEN the school wil believe me on that one!
What do you think I should say I want? His needs are not being met currently, he gets so frustrated and upset. People do not explain things to him and he needs that explanation often to the nth degree, no one besides OH and me and a few close friends have the patience. I think I am going to ask that the ed psych sees him and I will ask for DS to be statemented.

Savvy_Sue

So, it sounds as if you think your son needs 1:1 all the time he's in school, both for his physical needs and his socialisation / communication needs. Does that sound like it? If so, that's what you're hoping for. And you'll need a statement to get it.

IPSEA, Parent Partnership ...

In theory, the school should support statementing, because that brings money with it. Doesn't it? OTOH, some schools don't like to have too many statemented children, because they think it will be off-putting for parents who put too much faith in bald stats and SATS ...

blue_monkey_2

Hi everyone,

Well, I have not had toime to get too much done as I am trying to get sorted as we will be out of here soon, weeks really, so every spare moment is packing anything that will fit into a box and I can sneak out of the house without the kids noticing, LOL!!

Anyway, I called the doc and he is going to call CAMHS and find out what is going on as he said it is not good enough. 3 Doctors have now tries to get him reffered to CAMHS and they have bounced him back each time. 3 Doctors have now queried ADHD in him!!

However, on a good note he has been to the CDU and I have the results of the mental development skills. Ryan was 48 months and he got the following scores: Personal/Social 51 months, Eye/Hand Co-ordination: 58 months, Performance: 67 months (!!), Practical Reasononing: 51 months. So it is not all bad news, he sailed through these tests but he has social interation difficulties, restricted/repetetive bahviors and social communication difficulties. He shows Oppositional behaviour and some features of ADHD.

Does this sound like Aspergers?

I've not heard back about the DLA so it would be nice to get a private referral if he does get something. I am not holding my breath though.

bowz25

hi all
I posted few days ago to say my ds had appointment with community dctr.
He had been referred from school through my gp, due to poor writing drawing colouring skills and also his angry temper possibly dyspraxia?
I told the dctr all the details (always felt he had aspergers traits) DS had lots of tests with ball catching and he had to draw a person and some shapes, and cut with scissors etc.
The school have already carried out some of these tests and said writing was immature.
At then end of the session the dctr said does not think he has aspergers but did not mention dyspraxia at all and did not comment on how well my son had done in the tests.(is this normal) school said it is until they do a report or something.
I have been given a sheet called a movement abc for school and me to complete and send back to childrens centre.
I am not looking for a label but i have knew something was not right since my son was 3 and he is now nearly 9 years old. He did have speech therapy and other help before the age of 3.
He is bright and great at mental maths but can not put anything down on paper. The teacher and t.a have realised this as well at school and are concerned as he gets older he will begin to struggle with his peers in terms of writing.
take care all thanks for any advice.